Navigating the Complicated Health Care System (with transcript)

Suzanne Paolucci is a Licensed Clinical Social Worker who has dedicated her career spanning three decades to the field of geriatrics and life care planning. Suzanne's Advocacy Company, NY Care Consultants, LLC is a sought after company with professionals and patients due to her proven record of ensuring that her clients receive the best care possible and obtaining, when required, 24-hour live-in personal, or skilled care services through Medicaid Managed Care and Long-Term Care Insurance. In the past two ye?rs alone, she has secured over 1 million dollars in care benefits for the clients she has worked with.

Transcript

Frank Samson: Welcome to Boomers Today. I'm your host, Frank Samson. Of course each week on our show, we bring you important, useful information on issues facing baby boomers, their parents and other loved ones. We have with us today, Suzanne Paolucci, who is a licensed clinical social worker who has dedicated her career spanning three decades to the field of geriatrics and life care planning. Suzanne's advocacy company, New York Care Consultants, is a sought after company with professionals and patients due to her proven record of ensuring that her clients receive the best possible and obtaining when required, 24-hour live in personal or skilled care services through Medicaid managed care and longterm care insurance.

In the past two years alone, she has secured over $1 million in care benefits for the clients she has worked with. So Suzanne, really, it's an honor to have you on our show on Boomers Today. Thanks for joining us.

Suzanne Paolucci: Thank you. When you said $1 million, it surprised me for a second, but it's true. If you put the cost of care that I was able to secure for the clients I worked with, it turns out to be very invaluable money for people to stay at home and age gracefully at home with the care that they need.

Frank: Yeah. I congratulate you for all the work you've done.

Suzanne: Thank you.

Frank: So you've been in the field for a few decades. What was the catalyst of getting into it? Tell them then maybe, just lead in to tell us a little bit more about your organization and what you do.

Suzanne: Sure. Getting into the field of geriatrics was random. I was placed into an internship at a hospital here in New York in geriatric psychiatry. I was thinking I was going to go into child and adolescent medical issues and so forth, but I just fell in love with working with the geriatric population and was hired right out of school. Then I did what most people do when they have a family, I stopped for a while. When my daughter was ready to go to kindergarten, I decided I really need to look for a job. I was lucky enough to meet with an elder law attorney who was starting a life care planning firm. He brought me onto the team and we built it from ground zero.

The life care planning firm was a melding of legal and health issues. We worked as a team to ensure that our clients were treated holistically. I had the opportunity to follow clients for a period of over five years helping them along the care continuum, dealing with different stages of care needs and different parts to the care at home or in a nursing facility or an assisted living. Wherever the client went, I went with them and helped to advocate for care. Eventually I went out on my own and continued the same holistic model. I do consult with over 10 attorneys who I work with and try to bring that same model, but my career is kind of morphed into really just focusing more on appeals and advocacy work, whether it's at the nursing home or with insurance companies. That's where I've been most sought after at this point in time.

Frank: So, for example, how would you handle a situation where a family has been told that their elderly family member is being discharged from the hospital, and the family is unprepared to deal with it. They may not even feel like they have a place to stay. You deal with that all the time as well. Is that an example or can you maybe give us a couple examples of the type of work that you do?

Suzanne: Sure. That is definitely an example. In fact, this year alone, I got three panic calls where a loved one was being discharged from a hospital and the individual didn't have a right to participate in the process. That in and of itself is misinformation, first of all. Everyone has a right to participate in their own discharge planning. Luckily, I was able to resolve that with a quick phone call to remind the staff at the facility that a person has a right to determined where they want to go and that they really need to be in that process. But it brings up a bigger point that I always seem to face is that people tend to be pushed from system to system very quickly and sometimes they just need to help a person understand what their rights are and right to your own care and how you want that care to look like and to participate is really important. So that's one area where I can get involved.

Another area is I sometimes get hired just to come in and consult and develop a care plan. A care plan is, for me, it's a holistic roadmap of what a person needs and what resources are there to help them achieve the best goal possible. So I like to do a lot of consulting on that, especially at the early stages. I don't like to see when people are in crisis. Very often, I do get the crisis calls, but it's also very refreshing to be able to step in and be able to take a snapshot of a person's situation and offer them possibilities for dealing with any kind of triggers that are happening.

Frank: So what are most of the cases that you work on? Is it more planning or is it more crisis?

Suzanne: Well, it tends to be more crisis unfortunately, because crisis is a good thing in that it mobilizes people. It's an opportunity for change in a lot of ways. But usually, that's when people are most acceptable to taking advice. A lot of calls I do get is, "My loved one's in a nursing facility or rehab facility. They're getting ready for discharge. We don't know how to pay for the care. We don't know what kind of care we need. We are totally lost. What do we do next?" That's basically what often happens.

Frank: Right. When you mentioned earlier that it's kind of a goal to make sure that the individual could live at home, obviously with dignity. When you use the term, "home," is that a generic term? Does that mean their own personal residence or are you referring to just a safe place to live?

Suzanne: Home is anywhere where they consider themselves to be most comfortable. So I don't necessarily look at it as the home I'm sitting in right now; it could be an apartment, it could be an assisted living, it could be a nursing home. It's wherever that person decides they want to live and in the way they want to live. That's really important because whether you're at home, in the home you grew up with in, or if you're in a nursing facility, that's your space. Everyone deserves to have a safe space no matter where it is on the care continuum, or if it's at an institution, or if it's on the street where you grow up.

Frank: Right, right. I'm glad you made that distinction because sometimes that term, "home," everybody perceives that different.

Suzanne: Yeah, yeah.

Frank: I'm glad you gave that description. Also, tell us a little bit more about, I know you refer to it in your materials on your website, it's a term that's used in our industry all the time called, "the care continuum."

Suzanne: Sure.

Frank: Explain the care continuum. What is meant by that?

Suzanne: So if you look at a straight line and you think of a spectrum of situation, the care continuum starts off hopefully, for most people where there is no medical illnesses or no cognitive issues and you're not really receiving any kind of care and it doesn't cost anything to fund the care. But the continuum is as we age and as illnesses progress and chronic situations are there, our functioning may become more limited. As I look at the care continuum, the model often shows someone walking, then I see someone walking with a cane, then a walker, then a wheelchair. So it's just the matter of, hopefully people stay at the beginning stages and there is no care issues, but if someone does progress on a care continuum, there are going to be different needs and different ways to deal with disability.

Therefore, my work is really looking at functional limitation on a progression so to speak. With that, comes different needs. With that comes the cost of care, which we know is it can be astronomical. The goal in dealing with any kind of care continuum is always to think of it in a holistic way. So what can you do on the medical end to help limit disability and help someone manage their medical situation? How do you fund the care? Where is the best place to meet these care needs? Is it in a private residence? Is it an apartment? Is in an assisted living? Is it in a nursing facility? But also at the very, very end of the care continuum is end of life issues. Frank, I have to tell you, I've been in this industry for a long time. We don't deal with death very well and I often find that as an advocate, I'm often the one bringing up the conversation for the first time.

Medical doctors often seem reluctant to have that conversation and families often don't know if they should be bringing it up. There's a lot of different emotions and feelings coming there with death and dying, but helping someone to die with dignity and with respect is really important. I could give you a wonderful example of a crisis situation where a family came in and I'm sitting with the wife and the son and the son say out loud, "I just want my father to be out of pain. I don't care if it means he's dying. I just don't want him dying in pain." I obviously wanted to dig a little bit further to understand what that really meant. Essentially, what it meant was the gentleman was in a rehab facility and he had many, many broken bones. In a rehab facility, the goal is to physically rehabilitate to get you to a better state, but this man was in so much pain, he couldn't rehabilitate. Every time they went to go and get him up or go to change him, he was getting violent, he was in pain, he was miserable, and it was breaking the family's heart. To me, obviously, the rehab facility wasn't the best place to be receiving this current level of care. We were looking at a very different situation.

The first thing I did was I recommended a team meeting to review the care status and to ask the questions, "Is Mr. So-and-so able to rehabilitate or is there something else going on and is there a different place where Mr. so-and-so should be?" What ended up happening was he was brought back to the hospital because the facility said, "We can't rehabilitate him and he's in pain." With that, we were able to bring in a palliative care doctor who very gracefully, was able to have these conversations and basically said that, "Your loved one is really at the end stage of his life and how would you like to be pursuing the next steps?" And the next steps for him were the ability to move to a hospice facility.

I got a phone call three days later and the son said to me, "Thank you. My dad moved to the facility. He was able to be out of pain, no rehabilitation, nothing pushing him. He was able to get the opportunity to say to sit down with some friends and we were able to talk and he was able to say goodbye without really saying goodbye, but being in a presence of not fighting care, not pushing care, but just letting things be and allowing just the opportunity to be surrounded by family and loved ones," and to me, that was a win situation.

Frank: That's a good story. It's sad, but it's a good story.

Suzanne: Yeah, but oftentimes, people are fighting care and they're struggling and they're trying to change a situation that can’t really be changed and they're missing out on a really important opportunity. For this man, the opportunity was to just be with his family without being in pain and that to me, was a success. That's at the end of the continuum, but there are so many other facets that we could pick up when we get back.

Frank: You mentioned a couple of things that I want that are just so important that I'd like you to expound on. You were telling the story about a palliative care doctor that came in and then you talked about hospice. Can you just educate our listeners a little bit more about hospice and palliative care and the difference?

Suzanne: Sure, yeah. There is a difference and people often don't think there is. Hospice care is a philosophy of dealing with end of life. A person would qualify for hospice if the life expectancy of their life is about six months or less. If someone did qualify for hospice care, they would be entitled to palliative care, comfort care, as we often say it, and a bunch of other resources including social work, nursing, home health care, chaplain care, religious care, so forth. The family also is entitled to support and that support goes on after the person passes away.

Palliative care is a very important distinction. It is part of hospice care, but individuals who are dealing with chronic illnesses, you don't have to be dying in order to trigger a palliative care consult in a hospitalization. Palliative care is really designed to understand someone's chronic disability and to help them live a better life. I often use it as a tool in my tool box. If I feel like a family is going from hospital to hospital and not getting a lot of answers and so forth, I will always say, "Request a palliative care consult.” Palliative care consultants are taking the time to look at the big picture and provide an opportunity to explore how to best manage an illness. They're not there to actively treat, they're there to consult and they rely on information and history and so forth.

Often I will push for a palliative care consult to understand someone's illness better and to understand how to best manage it. That's just important distinction. There are some home care agencies that do offer temporary palliative care consultations. Medicare offers it as a benefit. It's something that can be really, really helpful, especially for this gentleman who is in the hospital and we were trying to understand is rehabilitation working, is it necessary, is it helpful? What other options are there? In that case, it led to hospice care. It doesn't have to lead to hospice. It can just lead to a different understanding of the illness and how to manage it.

Frank: Yeah, great explanation. Thank you. All of us that are in this type of work, first and foremost, we're thinking about the individual that is in need of care. All right? However, many times we're confronted with difficult situations, family situations and I'm sure you deal with that all the time. Can you talk a little bit about that as far as a power of attorney and who you can talk to in the family and what advice do you have for families that may not be on the same page as it relates to a parent's care?

Suzanne: Sure. So having worked in law firms for over 11 years before I went out on my own, I would definitely say one of the most important things is to do a legal review, not just when you're sick, before you're sick. You mentioned the power of attorney. It is very important to be able to have someone step in for you if you are not able to do so for yourself. If you lose your voice, if you've become disabled, whether it's physically or cognitively and you cannot actively advocate for yourself, a power of attorney is a document along with a healthcare proxy that appoints someone to take over and manage your daily life, your healthcare needs, your medical needs, your financial needs, your legal needs. Without it, and I've seen this happen unfortunately many a times, without it, if you lose the capacity to make your own decisions and you do not have an authorized agent to do so, you are forced to turn to the court systems to appoint a guardian.

I'll give you an example of a situation where I felt the healthcare system failed in a way. I was working with a gentleman, a husband and a wife, and the husband suffered a stroke. The first stroke was minimal. He had some residual issues with his left side of his body, but his cognition was intact. A few months went by and he suffered a second stroke. The second stroke affected him cognitively where he was no longer able to communicate or make decisions for him. Unfortunately, his wife didn't have a power of attorney. Okay? You wouldn't even think you're married to someone, they end up needing you to step in and she couldn't even go to the bank and access his bank accounts because she wasn't on them. She couldn't make healthcare decisions. So the only thing that she was able to do was to start a guardianship process, which took months, months.

Meanwhile, the gentleman is living in a hospital waiting placement and facilities were reluctant to take them because they weren't sure who the payer source is. So it required a lot of legal help to get them properly placed pending this court decision to grant her guardianship where all of this could have been avoided if she had the proper documentation that gave her authority. I call them HIPAA handcuffs often. Institutions and medical facilities and so forth will not talk to someone unless they are authorized to do so, and it can delay care, it can delay decisions, it could wreak havoc. I remember getting phone calls every week from the wife crying and just saying, "We're going to get there. We're going to get there. We just need to go through the process,' where it just stalls everything.

Frank: Yeah. I agree with everything you're saying. All right. But one additional bit of advice that I would add, and that is if whoever's listening to this podcast and this show, if you're 18 years or older, get a power of attorney.

Suzanne: Yeah. I agree with that.

Frank: Don't wait until you're in your 60s or 70s or 80s and then illness starts and then do it. Obviously, you could wait, but listen, we've heard of horror stories of families, even young people that needed a power of attorney and didn't have one and their own parents, even if they weren't married, couldn't make decisions for them because there was no power of attorney if they're over 18. So don't wait on that. Thanks for explaining that though.

Suzanne: The other important thing, believe it or not, is if you appoint someone to be your power of attorney, make sure you let them know where those documents are. Okay? That's another important thing. It's one thing to draw up a document, but if you don't let the person know that, "I'm choosing you to be my advocate and you're going to be my authorized representative," and something happens to you and they don't know they have that power, it's not going to help you in any way, shape or form. So that's another important point. Do not put it in a safety deposit box. That's the one thing. I personally, there's so many great apps out there that allow you to upload documents on a HIPAA compliant cloud that gives you easy access for information. I learned this the hard way and I guess that's why I share it. Share where your power of attorney is.

My mother was very secretive and when she was suffering a heart attack, I was with her on the way to the ambulance to get her to medical attention, but it took me hours to find her documents. Even though I was in the field and we talked about it all the time, she was very secretive and she wanted to keep her information private. It's not something you want to keep private. What I always recommend to families is keep information readily accessible. I use an app that I can invite someone to be on my app with me. It has access to my information. If I end up going in a hospital, they have access to my power of attorney, my healthcare proxy. They know what medications I have, they know my healthcare status and it just makes a much easier care transition and accessing care very quickly.

Frank: Right. Suzanne, I could talk to you for another hour or more on this subject matter, but unfortunately we're out of time. So I would like you to share with everybody maybe how if they wanted to get a hold of you or your website, anything you'd like to share with our listeners.

Suzanne: Sure, yeah. A great place to learn about me is my website. It's NYcareconsultants.com. As you said, on primarily in New York, so if you're in the New York area and you need advocacy work, that's a place where you could start. I think the best word of advice is there are so many great professionals and it's just a matter of starting with someone who's holistic and willing to look at the big picture and help you pull things together. I think that's just key. But yeah, thank you, Frank for inviting me and give me a chance to share some stories and important information and some tricks of the trade.

Frank: Thank you so much for joining us, Suzanne. I really appreciate it. Thanks for taking the time. We'll have you back some time.

Suzanne: Thank you. I'd love to come back.

Frank: Great. I want to thank everybody out there for joining us on Boomers Today. Just be safe out there and we'll talk to you all soon.